Annoyed with my IBD team

This totally sucks! I get why they did it but wish they had a faster game plan for you instead of a steady decline into flaring. I dont know how long approvals take over there but I hope it goes quickly. This disease really robs you of your freedom and happiness in the blink of an eye. I dont respond to oral steroids either. They go straight through me but still give me insomnia and road rage.

What a bunch of idiots. Sorry but this makes me really angry. The protocol for antibodies is they should try increasing dose/frequency first, before stopping. And there is something called informed consent which basically means you should be involved in the decision making. Your team clearly lacks knowledge on dealing with "complex" IBD cases (by complex i mean anyone who escalates to biologics).

I am from the UK originally but moved abroad. I have two sisters with crohns who both received superior care when they switched to hospitals affiliated with a university (i.e. where the doctors are actively involved in research and teaching).

There are many other biologics you can try, especially, there are several other anti-TNFs like infliximab. So you do have a lot of options and I think you will be fine, it's just frustrating that you are taken off one drug possibly unnecessarily, and without a plan B in place, and you're now in a bad flare as a result. Also, repeat courses of prednisone are not safe. Just because its cheap as chips that does not make it a viable option. Aargh i am angry on your behalf.

Thanks guys. Had stern words with my IBD team and GP today as obviously not happy with the situation and they have upped my pred to 40MG for now. If by Wednesday I’m still not improving, i am to contact them and they will discuss getting me back on a Biologics course. Regardless, I’m going to make sure they put me on the course again. It’s really pissed me off because i was doing so well for so long

It doesn't make sense they took you off it, even if you had antibodies. Sorry they did that. 30 mg is not very high of a dose. They've always started me at 40 mg of pred. Can you try 40 for a week or 2 instead or ask them? Most people start at 40 mg. Has the 30 worked for you in the past?

I didn't read all responses. I see you're on 40 now. I would ask if you can try increasing your inflectra dose or the frequency of infusions first.

Given your history, prednisone is not going to put you in a sustained remission even if it helps you feel better. Sounds like you'll have to steer your IBD team and push for a biologic. I would look into alternative hospitals if that's an option (depending on where you're based geographically that may or may not be feasible), your current team sounds hopelessly uninformed about best practices (it is NOT best practice to put patients on multiple courses of prednisone and they should do a dexa scan after 3 months of steroid use).

I'm in the U.S. so what I suggest may not be available for you

How long have you now been off infliximab?
Sometimes if it hasn't been too long they can restart it.

I've had 3 surgeries and multiple recurrent UTI infections forcing me off Infliximab for a periods of time. My GI put me on methotrexate to try to drive the antibodies down, (there are other immune modulator medications that can be used,) we waited a couple of weeks, then he increased the amount and shortened the interval on my infusions plus gave me premeds before my infusions. It's worked for me in 3 maybe 4 occasions. I'll admit this last one has been a bit more difficult but I'm not having issues after the infusion like I was. (To combat those issue I took Benedryl after the infusion for a certain amount of time and then we slowly weaned me off the post infusion Benadryl. I'll admit my last scope showed some issues but we are not sure if it's because it hadn't healed yet or if the Infliximab was no longer working as well.

Your length of time between your infusions makes it more likely that you have developed even more antibodies and so this may not be an option for you. You'll need to discuss it with a GI that specializes in biologics.

Regardless.... Your team of doctors need to get you back on medications --besides steroids -- and back into remission. I've never heard of doctors waiting around for a person to get worse before rendering care. I'm flummoxed with that type of thinking.

Steroids should only be used when absolutely necessary and for the shortest time possible. They are dangerous. There are some people on here that have had to had hip replacements because if steroids. (Steroids have impacted both my knees, hips and one shoulder.... They are now discussing surgery for me...)

I'm sorry you are going thru this. Now is the time to strongly advocate for your care. You need to be the squeaky wheel. Sometimes that's uncomfortable to do...but you need to make sure you are taken care of. Research medications so that you can try to lead them to the one that will meet your needs and their requirements.

I wish you the best of luck!... Please let us know how it goes.

Clo

Oh and sorry guys my apologies, was every 8 weeks my infliximab infusions, not every 2.5 months like originally stated. Point still remains that I’m angry they abruptly took me off it and subsequently I’m now flaring again after 3 years of remission on biologics

You don't have to think positive, unless you find that it helps you. It doesn't help me 🤣 (in fact generally I want to punch people in the face who tell me to stay positive).

But I'm happy you have a plan as that's the first step towards getting better. With IBD you usually have to be your own advocate. Good luck tomorrow.

Well i got a flex sigmoidoscopy Thursday and bloods i did the other day, so they just need these results to push for another Biological treatment so I’m getting somewhere at least. Doesn’t make me any less pissed off they took me off it and caused this flare. My IBD nurse answer to me questioning it was that i was in clinical remission and the infliximab supposedly wasn’t doing anything anymore and they didn’t want me getting treatment that could cause me harm. They basically take people off the Biologics seeing how patients respond. In other words, playing dice with peoples condition. Once i get this flare under Control, i will be talking of switching to a different IBD team

TBlock...I know nothing about biologic and ilk medications. I am shocked to hear a medication would be ceased when in medical remission and to see how a patient would respond. Seems like a wait and see as to when a patient will flare 😕

When one shows no antibodies, does that really mean the med is doing nothing? And increasing will increase antibodies? I'm learning a lot through this thread.

Please let us know the results of your flex-sig, and do you know what med is next onnthe tier for you to try?
Maybe THEY learned something through this remiss of their judgement.

q

Had the sig moidoscopy guys. Very red and aggressive flare left hand side of colon. Further up its healthy so isn’t spreading but no wonder why I’m so unwell and it’s taking ages to shake. Looks like I’ll be going on higher dose of pred 50MG or 60MG Monday just waiting on go ahead. Unfortunately the only thing that should get this under control, then a plan in place to get me back on a Biologic treatment to maintain long term remission again. I’ll be making a formal complaint to the NHS about this and effectively, my IBD team have put me in this flare. Could have been avoided.

Thanks. Already emailed my IBD team demanding they get me back on a Biologic treatment whilst this Pred kicks in. Thankfully, i have improved over the weekend and find myself finally turning. It’s my boys 2nd birthday next weekend so hopefully I’ll be miles better next week and heading towards remission again. I will make sure they get me back on Biologics. So pissed off with them, but it is what it is and I’m on the mend.